Defending Mastectomy Choice

Posted on: August 4th, 2014 by
18

Mastectomy is always in the news, it seems, and recent research focuses on women diagnosed with early stage breast cancer who opted to remove the affected breast as well as the supposedly healthy breast. The procedure is called contralateral prophylactic mastectomy, or CPM.

Peggy Orenstein addresses CPM in her widely read July 26 The New York Times Op-Ed piece titled “The Wrong Approach to Breast Cancer.” Orenstein says, “Researchers I’ve spoken with have called the spike [in CPM] an ‘epidemic’ and ‘alarming,’ driven by patients’ overestimation of their actual chances of contracting a second cancer.” She adds, “Well, first of all, it is extremely rare for a tumor on one side to spread to the other. Cancer doesn’t just leap from breast to breast. In any case, cancer confined to the breast is not deadly. The disease becomes lethal only if it metastasizes, spreading to the bones or other organs. Cutting off the healthy breast won’t prevent the original tumor from doing that.”

I have great respect for Orenstein, a two-time breast cancer survivor, and her Op-Ed piece is spot on — mostly. I do take issue with the title of the work because as we in Cancerland know, there’s no right way to do cancer, so how can there be a wrong approach? All we in Cancerland care about is saving our lives and making the best decisions we can with the Sword of Damocles hanging over our cluttered heads.

The road to prophylactic mastectomy is a difficult one, wrought with heavy decision-making. Most patients, I would think, do not just decide to lop off their breasts willy nilly. And I do not believe all women who opt for CPM are making the wrong decision. Unless one is faced with this devastating disease, he or she will never know how he/she will react.

I’m no medical expert, and all I can share is my point of view, and that is having a supposedly healthy breast removed should be the choice of the breast cancer patient.

Don’t get me wrong: I’m not promoting prophylactic mastectomy of any sort, but I do think it behooves us to listen to the patient and allow him or her to have the choice, if it’s a reasonable one. Those of us who hear the words “You have cancer,” are forever changed and want to save our lives. And, for some women, this means CPM.

***
Each woman’s or man’s breast cancer experience is like a fingerprint — unique to each person diagnosed. There are many complex factors to consider. My story, like everyone’s story, is unique. While I didn’t have CPM, I painstakingly decided to have a preventive mastectomy — on both supposedly healthy breasts — and years after my original breast cancer diagnosis to boot.

In 2001, I was diagnosed with cancer in my right breast. Understandably my world shattered. Forever.

I was a breast conservationist, as was my surgeon. He cited the studies that showed a lumpectomy with radiation was just as effective a treatment as a mastectomy in preventing a recurrence in the affected breast. Because I so desperately wanted to keep my breast, I opted for lumpectomy with radiation. When I told him my decision, he smiled. I knew he believed that saving my breast was the right choice.

And, at that time, it was.

However, lumpectomies can be overrated. In my case, the lumpectomy process was not so easy; after taking a sizable chunk out of my breast, the surgeon revealed that my margins were dirty, and he had to do a re-excision. This second lumpectomy caused an even greater deformity in my right breast. Although body-image issues began plaguing me, I decided to live with this deformed breast because, frankly, I didn’t want any more surgery.

I wanted peace.

Peace eluded me, however. The five years that followed were tumultuous — filled with scares and false alarms. My breasts were highly dense, and mammograms were not conclusive, so my oncologist ordered MRIs in addition to mammograms.

Russian Roulette

At the beginning of 2006, an MRI picked up an abnormality in the deformed breast. My staunch-breast-conservationist surgeon did yet another lumpectomy to remove the mass. Biopsy results revealed the mass was scar tissue from a previous lumpectomy. While I was relieved the results were benign, I was increasingly disconcerted and unhappy, living in constant fear of slipping through the cracks and getting an undetected recurrence in one or both of my breasts, thanks to my dense breast tissue.

Come to think of it, I was also upset by my now-mutilated breast.

Yet, if it weren’t for the breast density issue and the fear of a missed recurrence that gnawed at me, I still would have kept that breast. That’s how badly I did not want a mastectomy. But during the Scare of 2006, a radiologist told me, “Your breasts are so dense, it’s really hard to know what’s going on in there.”

I realized then, that, for me, keeping both breasts was akin to playing Russian Roulette.

After much deliberation, I told my surgeon I wanted a prophylactic bilateral mastectomy with reconstruction. He got all paternalistic on me and expressed that my decision was flawed. He refused to perform the mastectomy. While he was a surgeon noted for his excellence, I wondered how many lumpectomies on me were needed before he viewed the lumpectomy merry-go-round as mutilation.

I shopped around for surgeons who would buy into my choice.

I advocated for myself like I’d never advocated before. While some surgeons felt I had a screw loose, others said my decision was “medically sound.” My oncologist supported my decision completely, telling me, “If you don’t get this surgery, your life will be a series of continued scares, or you might have a recurrence that goes unnoticed.”

To me, this was no quality of life at all.

On December 1, 2006, I underwent a prophylactic bilateral mastectomy with DIEP flap reconstruction. Ironically, my mastectomy surgeon was a breast cancer survivor who had had a mastectomy years before. A doctor and a patient, she understood me. She knew that, in my case, a preventive bilateral mastectomy was a reasonable decision.

My recovery from the DIEP flap was difficult, despite my excellent reconstructive surgeons. But I knew about the difficult recovery, as well as the multitude of risks, before the surgery. I believe I made the best, most-informed choice I could have for my situation. I did not make this decision lightly. Despite my long recovery and the mind games that still plague me, I know I made the right decision — for me.

And, yes, I know that I can still have a recurrence in either or both breasts and that a prophylactic bilateral mastectomy is not a cancer panacea. But I opted for this procedure, hoping it could tilt the odds a bit more in my favor. Another patient in my circumstances might have opted to keep his or her breasts. And that’s fine.

Prophylactic mastectomy should be a choice for cancer patients.

Oh, and about the “healthy” left breast that was removed — the one that had never had cancer in it — it turns out it was filled with precancerous cells. “You would’ve probably had cancer again,” my oncologist told me. “Having you get this procedure was absolutely the right thing to do.”

Of course, if I still get a recurrence, I’m not so sure I would feel I did the right thing. I am human, after all. I made the best decisions I could under serious circumstances.

Breast cancer patients have a lot of decision-making to do, as so much is at stake.

***
Several medical professionals acknowledge the difficult decisions involved with prophylactic mastectomy. The Journal of the National Cancer Institute article titled “Marginal Life Expectancy Benefit From Contralateral Prophylactic Mastectomy” states later in the article, almost as an afterthought, “‘Survival is only one potential benefit of a cancer risk-reduction strategy; effects on cancer-related anxiety, cosmesis, and self-image are also important in decision-making processes.’”

Dr. Elaine Shattner in her article titled “It’s Not Just About Survival: Why Some Breast Cancer Patients Opt For Surgery on Both Sides,” acknowledges “But the decision [to opt for the preventive procedure] isn’t straightforward, as some might suggest. Survival isn’t the only issue. Rather, it’s about the quality of life after breast cancer surgery.”

And I hope my decision will give me the best possible quality of life. That’s all those of us in Cancerland really want, isn’t it?

A must-read post on this topic: Protecting Women’s Agency: On Prophylactic Surgery for Non-BRCA+ Patients

Diagnosis2

Where do you stand on the CPM issue?

Did you opt for a lumpectomy with radiation or mastectomy?

Feel free to share your opinions and your stories. I would love to hear them.


Tags: , , , , , ,

18 Responses to Defending Mastectomy Choice

  1. Amy Byer Shainman had this to say about that:

    Great post Beth! After the 3 #CPM articles last week I must say yours really ties it all together for me. It’s so important to share the personal stories (like yours) in addition to the nods to research and studies. Real stories and real people remind us that every patient is different and every decision regarding medical care is highly patient specific. Thank you.
    XO Amy @BRCAresponder

    • Beth L. Gainer had this to say about that:

      Thank you, Amy, for reading and commenting. Science is so important to making medical decisions, but I maintain that medicine is both a science and an art. And each patient’s situation is different and needs to be considered. My oncologist understands this; he is wonderful.

  2. julie goodale had this to say about that:

    I totally agree – it must be the patient’s decision, and length of survival is not the only important factor. But as patients, we all have a responsibility to be well informed, too – like you obviously were. I can’t fault anyone for making a well informed, well thought out decision from an honest assessment….. Sometimes I may not understand the choice, but I have to respect it.

    • Beth L. Gainer had this to say about that:

      Hi Julie,

      Your words, “well informed, well thought out decision” are perfect. It’s so easy to judge others’ choices, but it’s so hard, as we all well know, to be the one in the patient’s seat.

  3. Cancer Curmudgeon had this to say about that:

    Although this study is recent, I feel like this issue keeps popping up. Yes, I understand Orenstein was only discussing women with little risk. I guess my narrow view, which includes only my own situation and the blogs I choose to read regularly, it seems nothing is so simple,and the choices made–your story here especially–are quite sound and understandable.
    I “only” had a lumpectomy, and the new discussion is making me question myself. given that the hoped outcome is to reduce all this excess amputation, it’s ironic, huh? I looked back on my own blog and I’ve written about my annoyance with the critics of “unnecessary mastectomy” a couple times and will again. I especially liked Dr. Shattner’s point about survival not being the only issue of importance.
    I’m sure everyone is tired of reading about this, I am, and I’m tired of writing about it too. But, until everyone really LISTENS to all the reasons women make this choice, the writing will not be done.

    • Beth L. Gainer had this to say about that:

      Hi Cancer Curmudgeon,

      Yes, these discussions often lead us to question our choices. I’m sure you chose lumpectomy for a sound reason, and my lumpectomy nightmare is unique, although I’m sure there are other women out there whose lumpectomy/lumpectomies were detrimental. Even I wonder sometimes if getting a prophylactic mastectomy would really reduce recurrence. We often question ourselves, I think.

      I’m also tired of this topic, and I almost didn’t write on it because of this. But I just felt compelled to write.

  4. Nancy's Point had this to say about that:

    Hi Beth,
    Your post is a perfect illustration of how complex this whole topic is. I thought Orenstein’s article was an important and well-articulated piece. Like you, I was a bit uncomfortable with the title, but I also know that often-times other people pick titles. As usual, the bottom line is these decisions are personal and every woman’s case is unique. As long as the decisions are based on sound and complete information and a woman is given all the pros and cons regarding her choices, then I think we need to respect each woman’s right to think for herself and make the choices she feels are best for her. Thanks for the thought-provoking post, Beth.

    • Beth L. Gainer had this to say about that:

      Hi Nancy,

      Like you, I felt Orenstein’s article was really on target. I know there are doctors out there who just push women to get mastectomies, but luckily I didn’t encounter any in my career as patient. I would’ve hated to be pushed into a mastectomy.

      But like you say, this topic is very complex. I used my story to illustrate this. I was as well-informed as I could be; of course, as you know, not everything is told to us patients.

      Thank you, as always, for reading and commenting, and for your support.

  5. Jane had this to say about that:

    Your post and the comments above so eloquently describe what I went through and still go through 2 years after treatment. As I read your words they feel as real as if they are my own. I had scheduled a bilateral mastectomy when the pathology report from the first indicated invasive ductal and lobular carcinoma. The deciding factor was seeing photos at the plastic surgeons office and realizing I was going to have scars and no sensation if I had the surgery and my life expectancy would not change. My age (56), lifestyle, fear of recurrence, fear of facing surgery as a much older person, hope for new new treatments to be developed, fear of having nothing to scan if I had CPM thus no way to detect recurrence. I considered it all. I still needed another lumpectomy, then another, then 6 months later on the other side. I’ve never really healed from the lumpectomies, residual neural pain is constant so I do wonder what I would do if I had the choice to make again. Nevertheless I am still very happy to still have my breast and nipples. But one more incident and I will request a Bilateral mastectomy, my decision is made. I am comfortable now because I made an informed decision. As an aside, when I had a cancerous polyp removed from my colon earlier this year – basically DCIS of the colon-not one doctor gave me the option of removing part of my colon so I wouldn’t be afraid of recurrence. It really made me think of my initial diagnosis of DCIS and the decisions I was faced with. I am glad I took time to learn what I needed. Thanks.

    • Beth L. Gainer had this to say about that:

      Jane,

      Thank you for reading and commenting. It’s so clear to me that you made and are continuing to make the best, sound medical decisions that you can for yourself.

      You’ve been through your share of lumpectomies, and your decision is your decision to make.

      Interesting insight about no doctors giving you the option of removing part of your colon. Doctors have quite a different response with breasts, it seems.

      Stay healthy,

      Beth

  6. Pingback: Decision-making in the midst of medical un/certainty « Pink Ribbon Blues

  7. Lisa DeFerrari had this to say about that:

    Beth, thanks for your insights on this important topic. Although this discussion keeps coming up around CPM I think it’s really just as much about making medical decisions in general. It is so true that choices are often not simple even when we carefully consider the science. There is simply no “one size fits all” in this process and the more nuanced the choices the more we need to carefully understand our options and to be strong advocates for ourselves.

    • Beth L. Gainer had this to say about that:

      Lisa,

      Thank you for your response. You are right: this is all about making the best medical decisions possible for ourselves. We as patients certainly need to advocate for ourselves and become informed about our choices. Medicine is science, but it is also “nuanced” as you say, and that’s why I believe medicine is both science and art.

  8. Pingback: Decision-making in the midst of medical un/certainty - Breast Cancer Consortium

  9. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  10. Pingback: Decision-Making in the Midst of Medical Un/Certainty | Oncology News Australia | Australia's Specialist Oncology News Portal

  11. Margaret Fleming had this to say about that:

    Dear Beth: Thank you for the chance to read your thoughts. My alarm is not that CPMs exist – my alarm is with the findings of no benefit. And also with the “sudden” rush in the States for CPM though the women of the UK or EU are not rushing to demand it, as far as I’ve read so far. It’s Pressure I hate, and panic caused by the press and celebrities.

    • Beth L. Gainer had this to say about that:

      Hi Margaret,

      Thank you for reading and commenting. I agree that the findings are telling, and my quibble isn’t with the findings. I do believe some women are rushing into CPM so quickly before they can make an informed decision. However, as I said, well-informed decisions can include CPM. I find it interesting that the women in Europe are not demanding it as often as women in the US. I agree that the press and celebrities are one of the reasons for such panic. In truth, these individuals are often spreading false information, but the public buys into it.

Add Your Comment, Feedback or Opinion Here

Your email is safe here. It will not be published or shared. Required fields are marked *

*

You may use these HTML tags and attributes:

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>